MS IS A HOT TOPIC AT RECENT NEUROLOGY MEETING

NOW Quarterly Update SUMMER 2014

Sex hormones, salsa dancing and new exploratory therapies moving through the pipeline were among the topics of over 600 presentations focusing on MS during the American Academy of Neurology’s (AAN) annual meeting in late April. More than 12,000 neurologists and researchers convened to share progress in understanding and treating MS and other neurological diseases.

The generous contributions of donors like you are driving solutions for people with MS, as demonstrated by several National Multiple Sclerosis Society-supported investigators who presented promising findings on novel therapies focused on stopping MS, restoring function, and ending MS forever.

Pregnancy hormone estriol: Dr. Rhonda Voskuhl (UCLA) presented preliminary results of a clinical trial of the pregnancy hormone estriol combined with Copaxone® in relapsing-remitting MS. This study was inspired by the observation that MS relapses are less frequent during later pregnancy, a time when estriol is at high levels. In this trial of 164 women, the investigators determined that oral estriol plus Copaxone reduced the rate of relapses after one-year by 47% compared to women taking Copaxone alone, and also showed significant positive benefits in the scores of cognition tests.

Whipworm eggs: In a small clinical trial reported by Dr. John Fleming (University of Wisconsin) and colleagues, participants drank a sports drink containing the eggs of a parasite called porcine whipworm every two weeks for ten months. The number of active brain lesions detected at the end of the trial by MRI was moderately reduced compared to the number of lesions detected at the beginning of the trial, and they also found evidence that the treatment could promote the activity of disease-suppressing white blood cells. Repeating the trial in a larger population will be necessary for definitive conclusions to be made.

New lead for progressive MS treatment: Dr. Lior Mayo (Brigham and Women’s Hospital) and team investigated the potential of a vaccine-like therapy that stimulates cells that can turn off specific MS immune activity, which is the hallmark of progressive phases of MS. The “anti-CD3” vaccine was given to mice with a disease similar to secondary-progressive MS, reducing symptoms after the onset of progression. This early study suggests this approach merits further investigation.

Progression and menopause: Society fellow, Dr. Riley Bove, gathered information on MS during menopause from 391 women enrolled in a large-scale, long-term study at Brigham and Women’s Hospital. The results show that progression

Our $250M Commitment

Gender & MSMS affects women two to three times more often than men and is one of the reasons why the Society launched a special gender initiative in the early 2000’s. This initiative resulted in a significant increase in our understanding of the impact gender has on MS and increased the number of scientists pursuing these questions.

Gender continues to be a hot topic for Society-funded researchers, as seen through the results Drs. Voskuhl and Bove presented at AAN, and has now been addressed by the National Institutes of Health in a new policy requiring gender balance in pre-clinical research. MS gender research, largely funded by the Society, was used as evidence to support the change in policy, which may lead to increased treatment options in this area.

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How are salsa dancing and MS related? Most people would remain puzzled by this question, but if you ask leading rehabilitation researcher Dr. Albert Lo, you’ll hear something different. At the recent AAN meeting, he and his colleagues reported promising findings of their study that tested salsa dancing as a strategy to improve balance and gait. Exploring unconventional approaches to treating MS, such as salsa dancing, is just one of the many ways in which Society-supported researchers are thinking “outside the box” to uncover innovative, life-changing solutions for people with MS.

Encouraging and supporting innovative thinking is a priority for the Society and essential for progress to be made. Innovation is not only reflected in our vast portfolio of research projects and training awards, but also in the strategic initiatives that we drive to address specific unmet MS research needs.

One of the largest gaps in MS research today exists within our understanding of progressive MS. To fill this gap and bring answers to people living with progressive MS, the Society has teamed up with MS organizations across the globe that are committed to accelerating progress through collaboration. The first round of Progressive MS Alliance research grants marks a major milestone in our work to inspire the international research community to innovate so that effective treatments are discovered and made available to all people with progressive MS.

As salsa dancing reminds us, the most promising leads can come from the most unlikely of places. Your steadfast support of the NOW Campaign is the key to driving innovation and allows the Society to explore every promising path, ensuring that people affected by MS can live their best lives. Thank you!

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The National MS Society is partnering with the Ford Motor Company to raffle off a 2015 Mustang GT 50th Year Anniversary Convertible with the g o a l o f r a i s i n g $ 2 million for the NOW

Campaign. This ‘one of one’ vehicle was customized for the Ford/National MS Society raffle and will not be replicated again! Amazing Race host Phil Keoghan, the Society’s NOW research campaign ambassador and Ford enthusiast has joined the effort to raise awareness for the raffle. Learn more by visiting www.ford4ms.com where you can request your raffle tickets today.

EXPERTS DISCUSS ADVANCES IN LIVING WELL WITH MS

On June 3rd, the Society held its latest live web-cast, “Living Your Best Life” featuring a panel of MS research experts including the Society’s Chief Advocacy, Services and Research Officer, Dr. Timothy Coetzee, Dr. Dawn Ehde from the University of Washington, Dr. Barbara Giesser from UC Los Angeles, and Dr. Ari Green From UC San Francisco.

The lively discussion highlighted the many avenues Society-funded scientists are taking to explore lost function, improve symptom and pain management, address cognitive changes and maximize exercise regimens – all with the goal of ensuring that people are able to livelife to their fullest potential.

If you missed the conversation on June 3rd, visit the Society’s website to view a recording of the webcast. To learn more about the promising research taking place in this area of MS research, we are continuing the wellness discussion on our Society blog, msconnection.org/Blog.

THINKING OUTSIDE THE BOX

Yours truly,

Cyndi Zagieboylo

President & CEO, National MS Society

FORD MUSTANG RAFFLE TO RAISE $2 MILLION FOR NOW

International leaders from the Progressive MS Alliance met on June 11th in Washington, D.C. to make recommendations on the first round of grants aimed at fostering innovative research to improve understanding of genetic and biological processes in progressive MS, improve clinical trials and explore re-purposing of existing drugs. The initial call for proposals for these “Challenge Awards” generated an unprecedented response – 195 applications from the best and brightest minds across 22 countries – demonstrating the power of a global approach. Funding these commitments, expected to total $1.8 million, will mark an important milestone in the international community’s commitment to solve progressive MS. This initial work is anticipated to lead to more extensive scientific collaborations through a second round of grants focused on speeding drug development and symptomatic solutions.About the Progressive MS Alliance:

The Progressive MS Alliance is an unprecedented and rapidly growing global initiative to end progressive MS. In 2010, the Society convened the world’s leading experts in multiple sclerosis representing academia, industry, the government and sister MS Society representatives to review progress and barriers in addressing MS progression. As the most ambitious project in the history of progressive MS, the Alliance grew out of this meeting as scientists and leaders worldwide committed to a focused approach for identifying and addressing critical

knowledge and treatments gaps, and achieving breakthroughs in understanding, treating and ultimately ending progressive MS.

With key leadership from the National MS Society, the Alliance harnesses the knowledge, resources and determination of organizations, donors, researchers, industry and other partners to accelerate solutions for people with progressive MS through a carefully planned and ambitious program with four key priorities:

• Better understand treatment and progression to identifytreatments.

• Design shorter, faster trials to speed effective treatments to people living with progressive MS.

• Conduct trials to test existing agents to expand the pool ofpotential treatment options.

• Develop and evaluate new therapies to manage symptomsand improve quality of life.

With the participation of each person, organization and partner, the Progressive MS Alliance will bring an end to progressive MS. To explore your vital role in this life-changing work, please contact the Society.

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PROGRESSIVE MS ALLIANCE FOSTERS INNOVATION IN FIRST ROUND OF FUNDING

AAN HOT TOPICS (CONT. FROM PAGE 1)changed at or around menopause toward a more rapid accumulation of disability. Further research will determine whether hormonal shifts are responsible, which, may lead to a solution for women with MS going through menopause.

Salsa, anyone? Dr. Albert Lo, Rosalind Mandelbaum and colleagues (Brown University/Providence VA Medical Center)

enrolled eight people with MS in a four-week salsa dance program. Individuals participated in dance sessions twice a week. Dancing resulted in significant improvements in gait and balance both right after the program and after three months of follow up. The Society is now funding Dr. Lo and colleagues to conduct a larger study that may lead to more widespread use of dance as a therapy to improve function in MS.

Jane and Doug Jacobson have never been slow to commit. They were engaged three weeks after meeting in college (he crashed a fraternity party she was attending) and married five months later. Forty-five years, two children and seven grandchildren later, they have been quick to make other commitments along the way, including to the MS Movement. Most recently the Jacobsons made a $25,000 commitment to the National Multiple Sclerosis Society’s NOW Research campaign.

“Just in the last year and a half, I have seen the pool of information MS researchers have gathered grow at an amazing rate,” said Jane, who was diagnosed in 1987. “How could we NOT make a commitment?”

The couple are dedicated supporters of the MS Movement, but not solely because of Jane’s MS diagnosis. The former math teacher says it is the sense of purpose that grew out of her involvement with the Society that keeps her and her husband involved in a variety of ways.

HELPING OTHERS WITH MS

Jane is involved in the Society’s program that awards scholarships to selected college students, both nationally and locally in Wisconsin, and on the committee that organizes local events to

raise research funds. She speaks to community groups on behalf of the Society, and has participated in both the Society’s National Leadership Conference and the Public Policy Conference.

Recently, Jane traveled to New York City to observe the Society’s Research Programs Advisory Committee, a panel of the world’s leading MS researchers who make recommendations on research direction including which new research grant proposals to fund in the next year.

Doug, who owns his own private-label packaging, fulfillment and distribution company, has written two historical fiction books and donated their proceeds to the Society.

“Doug and I are blessed,” Jane says. “Yes, we are touched by MS, but I will not let my own MS be the center of my life. We want to be part of the solution.”

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INVESTING WITH A PURPOSE

NOW and No Opportunity Wasted utilized with permission

from NOW, Inc., and in partnership with Phil Keoghan,

tireless advocate and Champion for MS Research.

Witness the Society’s process for identifying the most promising MS research!

The Society offers numerous opportunities throughout the year to observe our scientific volunteer leaders rigorously review and recommend the most promising MS research to move forward. Connect with the Society to learn more about upcoming opportunities for engagement!

Jane and Doug Jacobson proudly pose at the Walk MS finish line

After years of working with the Society, the Jacobsons commit significant NOW gift.